BY RACHEAL NINSIIMA
KAMPALA – Scale-up of antiretroviral therapy (ART) has enabled thousands of children infected with HIV in Uganda to survive into adulthood, requiring transition of care to adult HIV clinics. Often, this transition is met with hesitation and anxiety. However, a good transition is necessary to build life skills and reduce risk-taking behaviours that may interfere with treatment adherence and retention in care. Recent research by Makerere University’s College of Health Sciences faculty describes barriers and facilitators for adolescents’ transition from adolescent to adult ART clinics.
Titled ‘Barriers and facilitators for transitioning of young people from adolescent clinics to adult ART clinics in Uganda’, the research was conducted among 174 youths in nine clinics across four Ugandan regions (Eastern, Western, Northern and Central) from August 2019 to January 2020. The majority of the participants were aged 20-24 and had acquired HIV through mother-to-child transmission. Led by Dr Scovia Nalugo Mbalinda as Principal Investigator, the research identified unfriendly adults in adult ART clinics, congestion and long waiting lines, fear of stigma and fear of loss of friends as key barriers to adolescents’ transitioning.
“Some of us are school-going children and are always on a quick schedule when we come to pick medication. However, in adult clinics, you have to wait the whole day because of too many people, which time we don’t have because sometimes we are rushing back to catch a test,” the report quotes one of the participants speaking to the congestion and long waiting lines in adult clinics.
According to Dr Mbalinda, delays at adult ART clinics are a result of limited scheduling flexibility; more patient-disease-focused care and few youth-friendly services. She underscores the need to establish youth-friendly services within adult clinics.
“The HIV service delivery approach for adolescents should fast-track drug pickup and establish flexible clinic hours that cater for in-school and out-of-school adolescents so that they don’t wait long,” she advises.
Furthermore, participants expressed fear of working with new health care providers in adult clinics who may lack knowledge and skills in handling them. They (adolescents) reported that these might make them feel stigmatized by repeating their life stories. Moreover, the stigma associated with disclosure of their serostatus in communities where they live was a significant barrier to joining adult care. The majority of the participants felt comfortable in adolescent clinics because of the friendship bond they have established with the healthcare providers. This makes them reluctant to engage healthcare providers in adult clinics. One participant remarked:
“We feel that our secrets are safe in the adolescent clinic and not in the adult one. We are of the same age, making it easy to understand each other. But in the adult clinics, we feel unsafe because we may meet our uncles and aunties who will expose our status to outsiders.”
As a strategic approach to address the stigma barrier, Dr Mbalinda says there is a need to train adult care providers in adolescent-friendly HIV care models. Such models help adolescents understand and learn how to deal with stigma as they move into adulthood.
Inversely, the study identified three factors that may facilitate a smooth transition of adolescents into an adult clinic. These are transition preparation whilst in an adolescent clinic, moving as a group and peer support programs within adult clinics. Talking to adolescents about what to expect in the adult clinic would facilitate successful transitioning regarding transition preparation. Such sessions may include information on the importance of transitioning, how adolescents and parents may prepare to transition and what they will likely experience after transitioning.
“A transition support plan should be started as soon as the adolescent is disclosed to it as this should be an individualized, flexible plan to meet the adolescent’s needs. Carefully planned transition recognizes the evolving developmental, medical, emotional and social needs of the adolescent,” Dr Mbalinda explains.
She adds that the transition process ought to be explained to adults in the adult clinic so that they may support the adolescents.
Furthermore, the adolescents remarked that taking them as a group to the adult clinic so that they move with their friends would facilitate the transitioning process. One participant remarked:
“All of us as we are should go at once because we know ourselves and associate with each other well. But imagine sitting next to a 70-year grandmother!”
Wholly, the researchers recommend better planning and preparation for clinical providers and young people, focusing on age-appropriate and individualized case management transition.
This study was supported by the NURTURE Research Training and Mentoring Program for Career Development at Makerere University’s College of Health Sciences (D43TW010132).